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Background: Paracentesis is commonly undertaken in patients with cancer-related ascites. Aim: To systematically investigate the symptomatic benefits and harms experienced by patients with cancer undergoing paracentesis using real-world data in the palliative care setting. Design: Prospective, multisite, observational, consecutive cohort study. Benefits and harms of paracentesis were assessed between 01/07/2018 and 31/02/2021 as part of routine clinical assessments by treating clinicians at four timepoints: (T0) before paracentesis; (T1) once drainage ceased; (T2) 24 h after T1 and (T3) 28 days after T1 or next paracentesis, if sooner. Setting/participants: Data were collected from 11 participating sites across five countries (Australia, England, Hong Kong, Malaysia and New Zealand) on 111 patients undergoing paracentesis via a temporary (73%) or indwelling (21%) catheter: 51% male, median age 69 years, Australia-modified Karnofsky Performance Score 50. Results: At T1 ( n = 100), symptoms had improved for most patients (81%), specifically abdominal distension (61%), abdominal pain (49%) and nausea (27%), with two-thirds experiencing improvement in ⩾2 symptoms. In the remaining patients, symptoms were unchanged (7%) or worse (12%). At least one harm occurred in 32% of patients, the most common being an ascitic leak ( n = 14). By T3, 89% of patients had experienced some benefit and 36% some harm, including four patients who experienced serious harm, one of which was a fatal bowel perforation. Conclusion: Most patients obtained rapid benefits from paracentesis. Harms were less frequent and generally mild, but occasionally serious and fatal. Our findings help inform clinician-patient discussions about the potential outcomes of paracentesis in this frail population.

Objectives Healthcare systems increasingly recognise the importance of service users’ perspectives for improving care organisation and delivery. The English Cancer Patient Experience Survey (CPES) is carried out annually, however, its representativeness within cancer types is unknown. We have explored if the CPES results are representative of people with lung cancer. Materials and methods We linked cancer registry data across multiple sources to assess how CPES represents sociodemographic and clinical characteristics of the National Lung Cancer Audit population, accounting for post-sampling mortality bias. Multivariable logistic regression was used to compare people included and not included in CPES. Results Of 240,375 people diagnosed (2009–2015), 15,967 (7 %) were included in CPES. Gender and ethnicity were reasonably represented, as were sociodemographic and clinical groupings, although more received anti-cancer treatment (96 % of CPES respondents vs. 56 % of patients nationally; adjusted odds ratio = 10.3, 95 % confidence interval 9.4–11.2 for any anti-cancer treatment) with chemotherapy most over-represented, followed by surgery and then radiotherapy. CPES under-represented older, more socioeconomically deprived, and certain clinical groups, including those with worse performance status, multiple comorbidities, and diagnosis via emergency presentation. Conclusion CPES includes patients across the sociodemographic and clinical spectrum indicating its value for research and service planning. Unbalanced representation of incident lung cancer cases is a limitation that must be considered in context of using CPES findings to implement service changes. Although half the national lung cancer population who received no anti-cancer treatment do not have their experiences represented, the strength of this dataset is in providing detailed comparisons of patient experiences across different treatment groups.

Background: A holistic needs assessment is recommended in people with cancer at key stages, including soon after diagnosis. For people with thoracic cancer, there is a lack of data obtaine...

Importance Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking. Objective To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs. Design, Setting, and Participants Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019. Interventions Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174). Main Outcomes and Measures Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat. Results A total of 350 patients (mean [SD] age 67 [12] years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, −0.16; 95% CI, −0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (−0.78; 95% CI, −1.29 to −0.26 vs −0.28; 95% CI, −0.82 to 0.26;P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks −$1367 (95% CI, −$2450 to −$282) in the SIPC group and −653 (95% CI, −$1839 to −$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers. Conclusions and Relevance In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted. Trial Registration isrctn.org Identifier:ISRCTN18337380

OBJECTIVE: Even when medical treatments are limited, supporting patients' coping strategies could improve their quality of life. Greater understanding of patients' coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables.METHODS: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance, and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used.RESULTS: Data from 675 patients with stage III/IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age (β = 0.05; CI[0.023; 0.074]), and patients from Italy (β = 1.57 CI[0.760; 2.388]) and Denmark (β = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries.CONCLUSIONS: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients' coping strategies.

Current methods of dosing platinum-based chemotherapy are suboptimal. Potentially, taking lean body mass into account may help. To inform the design of a future study, we first examined the feasibility and acceptability of such an approach using dual-energy X-ray absorptiometry (DEXA) and explored aspects suggestive of over- and under-dosing.Patients with lung cancer offered platinum-based chemotherapy over 1 year were identified and, if eligible, invited to take part in a prospective feasibility study. Questionnaires examined acceptability of the DEXA scan and of a future study that randomized between traditional dosing and one adjusted according to body composition. Dose-limiting toxicity (DLT) and a lack of neutropenia explored potential over- and under-dosing, respectively.Of the 173 patients offered chemotherapy, 123 (71%) were ineligible, mostly because of failing entry criteria (84, 49%). Of the 50 approached, 18 (36%) participated, most receiving carboplatin, with 17 providing data. All found a DEXA scan acceptable; other assessments were fully completed, except nadir and pre-chemotherapy blood counts. Most (94%) were prepared to take part in a future study, although the additional hospital visits for a nadir blood count were unpopular with some. Five (29%) patients experienced six episodes of DLT which resulted in discontinuation (3), dose reduction (2) or change to a less toxic regimen (1). Nine (60%) patients experienced either no (2) or inconsistent (7) neutropenia.A randomized trial appears acceptable and feasible in patients receiving carboplatin. Adjustment of our entry criteria and avoiding a hospital visit for a nadir blood count should aid recruitment.

Background: Breathlessness is common in patients with thoracic cancer but difficult to manage. The Incremental Shuttle Walking Test (ISWT) can help assess new treatments, but its repeatability has not been described in this group. Aim: To examine within and between day repeatability of the ISWT in this setting. Methods: Patients with incurable thoracic cancer were recruited from outpatient clinics at a University Hospital. Two ISWTs were completed one hour apart on two consecutive days, with the first test for familiarization purposes only. Repeatability of distance walked was examined using Bland and Altman plots and assessed as the single determination (within subject) standard deviation of the difference between tests and its 95% range. Results: Forty-one patients participated and completed all tests. Mean (SD) distance walked was 333 (134), 349 (129) and 353 (130) m over the three tests, with the mean difference significantly different from zero between days (16 m, 95% CI 8–24 m, P = 0.043) but not within days (5 m, 95% CI –2 to 12 m, P = 0.47). Within and between day single determination SD and 95% ranges were 30 (−31 to 91) m and 36 (−37 to 109) m respectively. Conclusions: These data help inform the design of studies making use of the ISWT and the interpretation of their findings.

Background The optimal prognostic factors in patients with advanced cancer are not known, as a comparison of these is lacking. The aim of the present study was to determine the optimal prognostic factors by comparing validated factors. Materials and Methods A multicenter, prospective observational cohort study recruited patients over 18 years with advanced cancer. The following were assessed: clinician-predicted survival (CPS), Eastern Cooperative Oncology Group performance status (ECOG-PS), patient reported outcome measures (anorexia, cognitive impairment, dyspnea, global health), metastatic disease, weight loss, modified Glasgow Prognostic Score (mGPS) based on C-reactive protein and albumin, lactate dehydrogenase (LDH), and white (WCC), neutrophil (NC), and lymphocyte cell counts. Survival at 1 and 3 months was assessed using area under the receiver operating curve and logistic regression analysis. Results Data were available on 478 patients, and the median survival was 4.27 (1.86–7.03) months. On univariate analysis, the following factors predicted death at 1 and 3 months: CPS, ECOG-PS, mGPS, WCC, NC (all p < .001), dyspnea, global health (both p ≤ .001), cognitive impairment, anorexia, LDH (all p < .01), and weight loss (p < .05). On multivariate analysis ECOG-PS, mGPS, and NC were independent predictors of survival at 1 and 3 months (all p < .01). Conclusion The simple combination of ECOG-PS and mGPS is an important novel prognostic framework which can alert clinicians to patients with good performance status who are at increased risk of having a higher symptom burden and dying at 3 months. From the recent literature it is likely that this framework will also be useful in referral for early palliative care with 6–24 months survival. Implications for Practice This large cohort study examined all validated prognostic factors in a head-to-head comparison and demonstrated the superior prognostic value of the Eastern Cooperative Oncology Group performance status (ECOG-PS)/modified Glasgow Prognostic Score (mGPS) combination over other prognostic factors. This combination is simple, accurate, and also relates to quality of life. It may be useful in identifying patients who may benefit from early referral to palliative care. It is proposed ECOG-PS/mGPS as the new prognostic domain in patients with advanced cancer.

Aims The role of selected treatments for brain metastases (BM) is well documented; however, the prevalence of these is not. We report on the patterns of care in the management of BM in a large oncology centre. Materials and methods We retrospectively audited 236 cases of newly diagnosed BM from January 2016 to December 2017 by looking at 2 years of radiology reports and gathered data on primary site, survival, treatment received, palliative care input and brain metastases-related admissions. Results Eighty-two per cent of cases were related to lung, breast and melanoma primaries. Half of patients received a form of treatment with the other half receiving best supportive care. Of these, whole-brain radiotherapy (39%) and stereotactic radiosurgery (40%) were the most common treatment modalities. Most common reasons for admissions were headaches, seizures, weakness and confusion. Conclusion This is the first study in the UK that gives an in-depth overview of the real-world management of brain metastases. We have demonstrated the prevalence of treatment across the spectrum of brain metastases patients. Radiotherapy is the mainstay of treatment in nearly 80% of cases; however, care needs to be taken in ensuring that SRS is offered to those who are suitable.

Objectives There is a need to improve the assessment of emotional functioning (EF). In the international Advance Care Planning: an Innovative Palliative Care Intervention to Improve Quality of Life in Cancer Patients - a Multi-Centre Cluster Randomized Clinical Trial (ACTION) trial involving patients with advanced cancer, EF was assessed by a customized 10-item short form (EF10). The EF10 is based on the European Organisation for Research and Treatment of Cancer (EORTC) EF item bank and has the potential for greater precision than the common EORTC Quality of Life Questionnaire Core 30 four-item scale (EF4). We assessed the relative validity (RV) of EF10 compared with EF4. Methods Patients from Belgium, Denmark, Italy, the Netherlands, Slovenia, and the United Kingdom completed EF10 and EF4, and provided data on generic quality of life, coping, self-efficacy, and personal characteristics. Based on clinical and sociodemographic variables and questionnaire responses, 53 “known groups” that were expected to differ were formed, for example, females versus males. The EF10 and EF4 were first independently compared within this known group, for example, the EF10 score of females vs the EF10 score of males. When these differences were significant, the RV was calculated for the comparison of the EF10 with the EF4. Results A total of 1028 patients (57% lung, 43% colorectal cancer) participated. Forty-five of the 53 known-groups comparisons were significantly different and were used for calculating the RV. In 41 of 45 (91%) comparisons, the RV was more than 1, meaning that EF10 had a higher RV than EF4. The mean RV of EF10 compared with that of EF4 was 1.41, indicating superior statistical power of EF10 to detect differences in EF. Conclusions Compared with EF4, EF10 shows superior power, allowing a 20% to 34% smaller sample size without reducing power, when used as a primary outcome measure.

Background In the UK, although 40% of patients with lung cancer are diagnosed following an emergency admission (EA), data is limited on their needs and experiences as they progress through diagnostic and treatment pathways. Methods Prospective data collection using medical records, questionnaires and in-depth interviews. Multivariate logistic regression explored associations between diagnosis following EA and aspects of interest. Questionnaire responses with 95% confidence intervals were compared with local and national datasets. A grounded theory approach identified patient and carer themes. Results Of 401 patients, 154 (38%) were diagnosed following EA; 37 patients and six carers completed questionnaires and 13 patients and 10 carers were interviewed. Compared to those diagnosed electively, EA patients adjusted results found no difference in treatment recommendation, treatment intent or place of death. Time to diagnosis, review, or treatment was 7–14 days quicker but fewer EA patients had a lung cancer nurse present at diagnosis (37% vs. 62%). Palliative care needs were high (median [IQR] 21 [13–25] distressing or bothersome symptoms/issues) and various information and support needs unmet. Interviews highlighted in particular, perceived delays in obtaining investigations/specialist referral and factors influencing success or failure of the cough campaign. Conclusions Presentation as an EA does not appear to confer any inherent disadvantage regarding progress through lung cancer diagnostic and treatment pathways. However, given the frequent combination of advanced disease, poor performance status and prognosis, together with the high level of need and reported short-fall in care, we suggest that a specialist palliative care assessment is routinely offered.

Background Early intervention against cachexia necessitates a predictive model. The aims of this study were to identify predictors of cachexia development and to create and evaluate accuracy of a predictive model based on these predictors. Methods A secondary analysis of a prospective, observational, multicentre study was conducted. Patients, who attended a palliative care programme, had incurable cancer and did not have cachexia at baseline, were amenable to the analysis. Cachexia was defined as weight loss (WL) > 5% (6 months) or WL > 2% and body mass index

Objective: To evaluate the psychometric properties, along with cross-cultural invariance analysis, of the Cancer Appetite and Symptom Questionnaire (CASQ). Method: Data from 555 United Kingdom (UK) cancer patients were used to evaluate the psychometric properties of the CASQ. Construct validity was assessed through factorial and convergent validity. We conducted a confirmatory factor analysis using as indices the chi-square ratio by degrees of freedom (χ2/df), the comparative fit index (CFI), the goodness of fit index (GFI), and the root mean square error of approximation (RMSEA). Convergent validity was estimated by the items’ average variance extracted (AVE). Reliability was estimated by composite reliability and internal consistency. Factorial invariance analysis of the CASQ was evaluated by multigroup analysis (Δχ2) using the UK and Brazilian samples. Results: All items showed adequate psychometric sensitivity in the UK sample. One item was removed and four correlations were included between errors with an appropriate fit of the model (χ2/df = 2.674, CFI = 0.966, GFI = 0.964, RMSEA = 0.055). The reliability of the CASQ was adequate and the convergent validity was low. The factorial structure of the CASQ differed across countries, and a lack of measurement invariance for the two countries was observed (λ: Δχ2 = 64.008, p < 0.001; i: Δχ2 = 3515.047, p < 0.001; Res: Δχ2 = 4452.504, p < 0.001). Conclusion: The CASQ showed adequate psychometric properties in the UK sample. The ability to estimate loss of appetite and the presence of symptoms was different between UK and Brazilian patients. Objetivos: Avaliar as propriedades psicométricas, juntamente com a análise de invariância transcultural, do Questionário de Apetite e Sintoma para Pacientes com Câncer (Cancer Appetite and Symptom Questionnaire, CASQ). Métodos: Dados de 555 pacientes com câncer do Reino Unido foram utilizados para avaliar as propriedades psicométricas do CASQ. A validade de construto foi estimada por meio das validades fatorial e convergente. Realizou-se análise fatorial confirmatória utilizando como índices a razão de qui-quadrado pelos graus de liberdade (χ2/gl), o comparative fit index (CFI), o goodness of fit index (GFI) e o root mean square error of aproximation (RMSEA). A validade convergente foi estimada pela variância extraída média (VEM). A confiabilidade foi estimada pela confiabilidade composta e consistência interna. A análise de invariância fatorial do CASQ foi avaliada por análise multigrupos (Δχ2) usando as amostras do Reino Unido e do Brasil. Resultados: Todos os itens apresentaram adequada sensibilidade psicométrica na amostra do Reino Unido. Um item foi removido e foram incluídas quatro correlações entre erros, o que resultou em ajustamento adequado do modelo à amostra (χ2/df = 2,674, CFI = 0,966, GFI = 0,964, RMSEA = 0,055). A confiabilidade do CASQ foi adequada e a validade convergente foi baixa. A estrutura fatorial do CASQ diferiu entre os países, e uma falta de invariância foi observada para os dois países (λ: Δχ2 = 64,008, p < 0,001; i: Δχ2 = 3515,047, p < 0,001; Res: Δχ2 = 4452,504, p < 0,001). Conclusão: O CASQ apresentou adequadas propriedades psicométricas na amostra do Reino Unido. A capacidade de estimar a falta de apetite e a presença de sintomas foi diferente entre pacientes do Reino Unido e do Brasil. Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP); Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES/PDSE); UK National Cancer Research Institute info:eu-repo/semantics/publishedVersion

Copyright © 2018, Mary Ann Liebert, Inc. 2018. Background: Haloperidol is widely prescribed as an antiemetic in patients receiving palliative care, but there is limited evidence to support and refine its use. Objective: To explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients. Design: A prospective, multicenter, consecutive case series. Setting/Subjects: Twenty-two sites, five countries: consultative, ambulatory, and inpatient services. Measurements: When haloperidol was started in routine care as an antiemetic, data were collected at three time points: baseline; 48 hours (benefits); day seven (harms). Clinical effects were assessed using the National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI CTCAE). Results: Data were collected (May 2014-March 2016) from 150 patients: 61% male; 86% with cancer; mean age 72 (standard deviation 11) years and median Australian-modified Karnofsky Performance Scale 50 (range 10-90). At baseline, nausea was moderate (88; 62%) or severe (11; 8%); 145 patients reported vomiting, with a baseline NCI CTCAE vomiting score of 1.0. The median (range) dose of haloperidol was 1.5 mg/24 hours (0.5-5 mg/24 hours) given orally or parenterally. Five patients (3%) died before further data collection. At 48 hours, 114 patients (79%) had complete resolution of their nausea and vomiting, with greater benefit seen in the resolution of nausea than vomiting. At day seven, 37 (26%) patients had a total of 62 mild/moderate harms including constipation 25 (40%); dry mouth 13 (21%); and somnolence 12 (19%). Conclusions: Haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.

Purpose Compared to others, patients diagnosed with lung cancer following an emergency, unplanned admission to hospital (DFEA) have more advanced disease and poorer prognosis. Little is known about DFEA patients’ beliefs about cancer and its symptoms or about their help-seeking behaviours prior to admission. Methods As part of a larger single-centre, prospective mixed-methods study conducted in one University hospital, we undertook qualitative interviews with patients DFEA and their carers to obtain their understanding of symptoms and experiences of trying to access healthcare services before admission to hospital. Interviews were recorded and transcribed. Framework analysis was employed. Results Thirteen patients and 10 carers plus 3 bereaved carers took part in interviews. Three patient/carer dyads were interviewed together. Participants spoke about their symptoms and why they did not seek help sooner. They described complex and nuanced experiences. Some (n = 12) had what they recalled as the wrong symptoms for lung cancer and attributed them either to a pre-existing condition or to ageing. In other cases (n = 9), patients or carers realised with hindsight that their symptoms were signs of lung cancer, but at the time had made other attributions to account for them. In some cases (n = 3), a sudden onset of symptoms was reported. Some GPs (n = 6) were also reported to have made incorrect attributions about cause. Conclusion Late diagnosis meant that patients DFEA needed palliative support sooner after diagnosis than patients not DFEA. Professionals and lay people interpret health and illness experiences differently.

Clarithromycin may improve cachexia and survival in non-small cell lung cancer (NSCLC), but adequately controlled data are lacking. This study was undertaken primarily to inform the feasibility and scale of a phase III trial. Eligible consenting patients with stage IV NSCLC and cachexia were to be randomized to receive either clarithromycin 250 mg twice daily or placebo for eight weeks. Aspects of trial feasibility recorded included numbers eligible, approached and recruited, together with adherence and completion of treatment and assessments. Over 6 months, none of 125 patients identified fulfilled the entry criteria. The commonest reasons for ineligibility were the use of an excluded concurrent drug (45, 36%), brain metastases (22, 18%), poor performance status (21, 17%) and current chemotherapy (15, 12%). A phase III trial of clarithromycin using these entry criteria is not feasible in this setting. Other macrolides that have a lower risk of a drug–drug interaction may be more practical to pursue.

Guidelines recommend screening patients with cancer to identify their rehabilitation needs. To help quantify this area of need and associated workload from an occupational therapy perspective in patients with thoracic cancer, we report the experiences of a dedicated rehabilitation service. Consecutive patients were screened soon after diagnosis using items associated with occupational performance in the Sheffield Profile for Assessment and Referral for Care questionnaire. Those reporting predetermined levels of distress underwent a full occupational therapy evaluation; this generated a problem list from which individualised goals and interventions were instigated. Of 540 patients screened, 273 (51 %) reported levels of distress which warranted a full occupational therapy assessment. Of these, 260 (95 %) reported a total of 681 problems (median of 4 [2–5] per patient). Mostly these lay within the domain of self care (553, 78 %) in the categories of transfers, functional mobility and bathing/showering. A total of 646 goals (median of 2 [1–3] per patient) were formulated, resulting in 652 individual interventions, most frequently the provision of equipment (79 %) or advice (32 %) and referral to another professional/agency (23 %). Patients considered that most goals were achieved (98 %) and that the provision of equipment was useful (97 %). About half of patients with thoracic cancer screened have occupational therapy needs around the time of diagnosis. Problems are mostly in the area of self-care, with equipment provision the most frequent intervention provided. Future work should examine the efficacy of occupational therapy interventions further.

BackgroundThere is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population.Data and methodsData were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson's disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). The IPOS Neuro-S8 was assessed for its data quality, score distribution, ceiling and floor effects, reliability, factor structure, convergent and discriminant validity, concurrent validity with generic (Palliative care Outcome Scale) and condition specific measures (Multiple Sclerosis Impact Scale; Non-motor Symptoms Questionnaire; Parkinson's Disease Questionnaire), responsiveness and minimally clinically important difference.ResultsOf the 134 participants, MS patients had a mean Extended Disability Status Scale score 7.8 (SD = 1.0), patients with an IPD, MSA or PSP were in Hoehn & Yahr stage 3-5. The IPOS Neuro-S8 had high data quality (2% missing), mean score 8 (SD = 5; range 0-32), no ceiling effects, borderline floor effects, good internal consistency (Cronbach's α = 0.7) and moderate test-retest reliability (intraclass coefficient = 0.6). The results supported a moderately correlated two-factor structure (Pearson's r = 0.5). It was moderately correlated with generic and condition specific measures (Pearson's r: 0.5-0.6). There was some evidence for discriminant validity in IPD, MSA and PSP (p = 0.020), and for good responsiveness and longitudinal construct validity.ConclusionsIPOS Neuro-S8 shows acceptable to promising psychometric properties in common forms of progressive LTNCs. Future work needs to confirm these findings with larger samples and its usefulness in wider disease groups.

Background Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. Methods The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Results Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS). Conclusions This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness. Electronic supplementary material The online version of this article (doi:10.1186/s12883-016-0583-6) contains supplementary material, which is available to authorized users.

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients’ values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life.Methods/Design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients’ quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients’ preferences, patients’ evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators.Discussion: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making.Trial registration: International Standard Randomised Controlled Trial Number: ISRCTN63110516 . Date of registration: 10/3/2014.

Cachexia is common in patients with thoracic cancer impairing physical function and quality of life. New approaches which target muscle tissue are emerging and activity monitors could provide an objective assessment of their effect on physical function. We have collated data from three studies involving the use of one such monitor in order to benchmark aspects of physical activity for patients with thoracic cancer, explore how these relate to physician-rated performance status, and consider the implications for future studies. Patients with thoracic cancer and an Eastern Cooperative Oncology Group Performance Status (ECOG PS) of 0–2 wore an ActivPAL™ monitor for 1 week. The mean time spent each day in a range of activities, e.g. standing or stepping, or their frequency, e.g. number of sit-to-stand transitions, steps taken, were calculated and compared according to ECOG PS. Data from 84 patients (54 male; mean (SD) age, 66 (9) years) were collated. Each day, patients spent a mean (SD) of 4.3 (2.0) h upright, completed 45 (17) sit-to-stand transitions and took 4,246 (2,983) steps. There was wide variation in each activity examined. All but the number of sit-to-stand transitions differed significantly between ECOG PS categories. These data provide a detailed insight into how physical activity levels decline across the range of ECOG PS categories studied. The wide variation in physical activity within each ECOG PS category suggests that this scale may lack sufficient sensitivity to evaluate new cachexia treatments. Our data help to inform future work in this area.

Summary Background Palliative oxygen therapy is widely used for treatment of dyspnoea in individuals with life-limiting illness who are ineligible for long-term oxygen therapy. We assessed the effectiveness of oxygen compared with room air delivered by nasal cannula for relief of breathlessness in this population of patients. Methods Adults from outpatient clinics at nine sites in Australia, the USA, and the UK were eligible for enrolment in this double-blind, randomised controlled trial if they had life-limiting illness, refractory dyspnoea, and partial pressure of oxygen in arterial blood (PaO 2 ) more than 7·3 kPa. Participants were randomly assigned in a 1:1 ratio by a central computer-generated system to receive oxygen or room air via a concentrator through a nasal cannula at 2 L per min for 7 days. Participants were instructed to use the concentrator for at least 15 h per day. The randomisation sequence was stratified by baseline PaO 2 with balanced blocks of four patients. The primary outcome measure was breathlessness (0–10 numerical rating scale [NRS]), measured twice a day (morning and evening). All randomised patients who completed an assessment were included in the primary analysis for that data point (no data were imputed). This study is registered, numbers NCT00327873 and ISRCTN67448752. Findings 239 participants were randomly assigned to treatment (oxygen, n=120; room air, n=119). 112 (93%) patients assigned to receive oxygen and 99 (83%) assigned to receive room air completed all 7 days of assessments. From baseline to day 6, mean morning breathlessness changed by −0·9 points (95% CI −1·3 to −0·5) in patients assigned to receive oxygen and by −0·7 points (−1·2 to −0·2) in patients assigned to receive room air (p=0·504). Mean evening breathlessness changed by −0·3 points (−0·7 to 0·1) in the oxygen group and by −0·5 (−0·9 to −0·1) in the room air group (p=0·554). The frequency of side-effects did not differ between groups. Extreme drowsiness was reported by 12 (10%) of 116 patients assigned to receive oxygen compared with 14 (13%) of 108 patients assigned to receive room air. Two (2%) patients in the oxygen group reported extreme symptoms of nasal irritation compared with seven (6%) in the room air group. One patient reported an extremely troublesome nose bleed (oxygen group). Interpretation Since oxygen delivered by a nasal cannula provides no additional symptomatic benefit for relief of refractory dyspnoea in patients with life-limiting illness compared with room air, less burdensome strategies should be considered after brief assessment of the effect of oxygen therapy on the individual patient. Funding US National Institutes of Health, Australian National Health and Medical Research Council, Duke Institute for Care at the End of Life, and Doris Duke Charitable Foundation.

Purpose of review To examine the recent literature with regards to methadone, prolongation of the QT interval, torsade de pointes and the implications for palliative care clinicians. Recent findings There is a disproportionate number of unexpected deaths seen in patients receiving methadone. Although many of these deaths are likely to be a result of respiratory depression, torsade de pointes may be a contributing factor. Guidelines have been developed to minimize the risk, but these are generally based on expert opinion because of a lack of robust evidence. Routine ECG screening is controversial, but most guidelines advise an ECG in the presence of one or more risk factors for QT interval prolongation. Summary The safe use of methadone requires clinicians to be familiar with its pharmacology and to closely monitor patients to avoid an unintentional overdose. As a minimum, clinicians should be aware of the advice regarding prolonged QT in the Summary of Product Characteristics for methadone and the general advice regarding ECG monitoring. These can be given due consideration when balancing the benefits versus the risks of the use of methadone, taking the circumstances of the patient fully into account. Clinicians should also be aware of the potential significance of palpitation, syncope or seizure-like activity in a patient taking methadone.

The Research Network of the European Association for Palliative Care (EAPC) performed a survey of 3030 cancer patients from 143 palliative care centres in 21 European countries. The survey addressed pain intensity and the use of non-opioid analgesics, adjuvant analgesics and opioids. Patients were treated with analgesics corresponding to the WHO pain ladder step I (n / 855), step II (n / 509) and step III (n / 1589). The investigators assessed 32% of the patients as having moderate or severe pain. In general there were small differences between pain intensities across different countries. Cancer primary sites and the presence of metastasis had only minor influences on pain intensity. The most frequently used nonopioid analgesics were NSAIDs (26%) and paracetamol (23%). Adjuvant analgesics or coanalgesics used by / 1% of the patients were corticosteroids (39%), tricylic antidepressants (11%), gabapentin (5%), bisphosphonates (4%), clonazepam (2%), carbamazepine (4%) and phenytoin (2%). The use of non-opioid analgesics and co-analgesics varied widely between countries. Opioids administered for mild to moderate pain were codeine (8%), tramadol (8%), dextropropoxyphene (5%) and dihydrocodeine (2%). Morphine was the most frequently used opioid for moderate to severe pain (oral normal release morphine: 21%; oral sustained-release morphine: 19%; iv or sc morphine: 10%). Other opioids for moderate to severe pain were transdermal fentanyl (14%), oxycodone (4%), methadone (2%), diamorphine (2%) and hydromorphone (1%). We observed large variations in the use of opioids across countries. Finally, we observed that only a minority of the patients who used morphine needed very high doses.

Aim To determine the potential for drug interactions involving cytochrome P450 (CYP) in patients receiving palliative day care. Methods Drugs used by patients attending four specialist palliative day care centres were reviewed to identify combinations that could result in a pharmacokinetic interaction via any of the five main human forms of CYP. Results Of 160 patients, 145 (91%) were prescribed at least one drug that was a substrate, inhibitor or inducer of one of the five main CYP isoforms. Twenty-four drug combinations, involving 34 patients, could have given rise to a clinically important interaction. Conclusions Prescribers should be aware that in this group of patients, one in five are at risk of a clinically important CYP-mediated drug interaction.

We report the development of an arm exercise test to assess breathlessness in patients with lung cancer who are breathless at low levels of exertion. Exercise consisted of raising the arm over 40 cm, either the dominant arm only (n=10) or both arms alternating at minute intervals (n=12). Subjects breathed through a mouthpiece, and ventilation ( V ˙ E) and oxygen uptake ( V ˙ O 2 ) were measured. Following familiarization, three tests were performed over one week to explore repeatability, and sensitivity was assessed in a fourth test. Arm exercise was generally well tolerated and increased breathlessness, V ˙ E, and V ˙ O 2 . The commonest factor limiting exercise was arm fatigue, although four patients in the two-arm test also reported breathlessness. Repeatability for breathlessness score and V ˙ E was best in the two-arm test. The added resistance used to assess sensitivity could not be detected. The two-arm test offers a potential means of assessing the effects of an intervention on breathlessness and E in patients for whom a cycle or treadmill exercise test is unsuitable.

Prolonged QT interval on the electrocardiogram (ECG) is associated with an increased risk of cardiac arrhythmia and sudden death. Many drugs used in palliative medicine increase the QT interval and several have had their licenses withdrawn or severely restricted. The relative importance of prolonged QT interval will increase for palliative medicine physicians when dealing with patients with longer prognoses and especially cardiac disease. Given these safety concerns, the aim of this study was to determine the prevalence of a prolonged QT interval in palliative care patients who were not in the terminal stage and were referred to a specialist service. Of 300 patients, 47 (16%) had prolonged QTc but only two had QT >500ms. The presence of coexistent cardiac disease or high levels of serum alkaline phosphatase appear to be the clinical features most robustly associated with a prolonged QTc. Although prolonged QTc is relatively common in patients referred to a specialist palliative care service, severely prolonged QT is rare.

Three transmucosal fentanyl products have recently been licensed for cancer-related breakthrough pain: a sublingual tablet, a buccal/sublingual tablet and a nasal spray. Limited comparative data hinder identifying the most appropriate to use and adopt onto a service formulary. However, the availability of placebo formulations provides a unique opportunity to compare the practical aspects of their use.30 patients with cancer accessed and administered a placebo of each product and were asked to rate them using 1-7 Likert agree-disagree scales and free-text responses, with regard to ease of access and administration, palatability and overall impression. Participants rated their usual rescue analgesic similarly, based on recall. They also indicated whether they would be prepared to use the fentanyl product, and their most preferred.For accessibility, the usual rescue analgesic was rated best (median score 3), significantly better than the buccal/sublingual tablet (p=0.01) and nasal spray (p0.01), but not the sublingual tablet. Conversely, the nasal spray was rated significantly worse (median score 7) than the others (p0.01). For ease of administration, the usual rescue analgesic and sublingual tablet were rated equally best (median score 1), with only the latter being significantly different to the buccal/sublingual tablet (p=0.04) and nasal spray (p=0.05). For palatability, the sublingual tablet was rated the best (median score 2), but was significantly different only to the buccal/sublingual tablet (p0.01). For overall impression, the sublingual tablet was rated significantly better (median score 3) than the others, with more patients prepared to use it and selecting it as their most preferred (27 and 18, respectively).This survey provides valuable insight into the practical aspects of these three transmucosal fentanyl products for practitioners considering their use.

Despite the availability of effective methods of controlling pain, many patients continue to receive inadequate pain relief. An audit was carried out on a single day to identify the prevalence, severity and management of cancer pain in adults in the two teaching hospitals in the Nottingham Cancer Centre. Of 186 patients with cancer, 52 had experienced pain as a result of their cancer during their admission. Of these 52 patients, 47 were assessed. More than half had unrelieved pain that was ‘severe’ at its worst and interfered greatly with activities. Compared with patients whose pain had been relieved, patients with uncontrolled pain were likely to have spent less time in hospital, to have not had a formal assessment or reassessment of their pain and not to have a pain-care plan in the nursing notes or to have been seen by the hospital specialist palliative care team. We use our results to highlight areas of good practice, to identify where improvements could be made, and to inform the development of local standards and future audits.

Objective To determine the relative accuracy during treadmill walking and motor vehicle travel of the ActivPAL, PALlite and Digi-Walker accelerometers. Methods Forty healthy volunteers wearing all accelerometers undertook either five treadmill walks (n=20) at speeds ranging between 0.6 and 1.4 m/s or a 15 min motor vehicle journey (n=20). Step counts recorded by each accelerometer were compared with the actual step count determined by video analysis (treadmill walking) or with an actual step count of zero (motor vehicle). Mean percentage measurement error was calculated and compared between devices by one-way ANOVA and Student t test. Results For treadmill walking, the measurement error was lowest for the ActivPAL, with no significant differences between the ActivPAL and the PALlite monitors. The measurement error was significantly higher for the Digi-Walker at speeds of ≤1 m/s. During vehicle travel erroneous steps were recorded by the PALlite (254 steps) and Digi-Walker (25 steps), but not the ActivPAL monitor (0 steps). Conclusions The ActivPAL accelerometer accurately measures step count over a range of walking speeds and, unlike the other accelerometers tested, is not falsely triggered by motor vehicle travel.

Therapeutic Reviews aim to provide essential independent information for health professionals about drugs used in palliative and hospice care. Additional content is available on www.palliativedrugs.com. Country-specific books (Hospice and Palliative Care Formulary USA, and Palliative Care Formulary, British and Canadian editions) are also available and can be ordered from www.palliativedrugs.com. The series editors welcome feedback on the articles (hq@palliativedrugs.com).

SummaryBackgroundPatients with incurable thoracic cancer often complain of a reduced ability to exercise, but the cause of this has been little studied. Thus, we have explored how various physiological and psychological factors relate to exercise performance in this group.MethodsInspiratory muscle strength, peripheral muscle power, lung function and mastery over breathlessness were assessed using sniff nasal inspiratory pressure, leg extensor power, simple spirometry and the mastery domain of the Chronic Respiratory Disease Questionnaire respectively. Exercise performance was assessed using the Incremental Shuttle Walking Test (ISWT) during which patients wore a K4 b2 system permitting measurement of resting and breakpoint heart rate, minute ventilation (VE) and oxygen uptake (VO2). Relationships between ISWT distance and the four factors were determined using correlation and β regression coefficients.ResultsForty-one patients (21 male, mean (SD) age 64 (8) years) walked a median [IQR] of 320 [250–430] metres and reached a mean (SD) of 76 (10), 77 (25), and 48 (14) of their percent predicted maximum heart rate, VO2, and VE respectively. Exercise performance was significantly associated only with inspiratory muscle strength (r = 0.42, P

Objective: Therapeutic exercise may benefit patients with incurable cancer, but there is little data on its practicality. We have explored the acceptability of six exercise programmes based on different types of exercise, the preferred delivery method, location and time relative to anticancer treatments and whether various patient characteristics influence choice of exercise. Methods: A questionnaire determined patients' perceived capability and preparedness to undertake six exercise programmes, each illustrated by looping video clips and accompanying text, most preferred programme and preferences for its delivery. Frequency counts and percentages were calculated and multiple logistic regression used to examine associations between patient characteristics and preparedness to undertake each of the programmes. Results: Two hundred patients (103 female; mean (SD) age 64 (9); ECOG 02) with common incurable cancers mostly receiving palliative chemotherapy took part. All considered themselves physically capable of undertaking one or more of the exercise programmes and two-thirds were prepared to undertake a programme at that moment in time. The three most preferred exercise programmes were those based on neuromuscular electrical stimulation, walking and resistance training. The majority of patients preferred to undertake exercise at home, alone and unsupervised. One-third were not prepared to undertake any exercise, with a tendency for the least prepared to be older males and those with a lower performance status. Conclusions: Our findings suggest that it is realistic to develop exercise as a supportive therapy for patients with incurable cancer, including those receiving chemotherapy, and can be used to inform further research in this area. Copyright © 2010 John Wiley & Sons, Ltd.

Cancer cachexia impacts on treatment options, quality of life and survival. New treatments are emerging but need to be assessed using outcomes which patients find meaningful. One approach is the measurement of physical activity levels by small lightweight monitors, but experience is limited in cancer patients. This study formally assessed the acceptability of wearing an ActivPAL™ monitor for 1 week using compliance based on analysis of movement data. The optimal period of monitoring was explored by comparing mean values of daily step count and energy expenditure (EE) for 2 or 4 and 6 days of monitoring. The relationships between step count, stepping EE and non-stepping EE were also explored. Sixty patients (mean age 68 years; Eastern Cooperative Oncology Group performance status 0–2) with lung or upper gastrointestinal cancer took part. All but one found that the monitor acceptable and mean [95% CI] compliance was 98% [94–100%]. Median daily step counts and EE scores over 2 or 4 days were significantly higher than those from 6 days (p ≤ 0.01). Step count was strongly related to stepping and non-stepping EE (r = −0.911, p

Summary Introduction Therapeutic exercise, although potentially beneficial, does not appear acceptable to many cancer patients. A greater understanding of the reasons for this is required. We have systematically reviewed the use of exercise in this group, identifying rates of uptake, adherence and completion along with factors influencing acceptability. Methods Searches were completed using relevant key words. Data on study design, patient group, exercise intervention, patient flow data and reasons for declining or withdrawing from a programme were independently extracted by two researchers. Rates of study uptake, completion and adherence were compared according to dichotomised patient or programme characteristics using Mann Whitney U test (p = 0.05). Reasons provided when declining or withdrawing from a study were categorised. Results Sixty five studies were included. The majority contained groups made up entirely or predominantly of patients with breast cancer offered an aerobic or resistance exercise programme. The median [IQR] rates of uptake, adherence and completion were 63 [33–80]%, 84 [72–93]% and 87 [80–96]%, respectively. No characteristic influenced the proportion of patients taking up or completing a programme. The main reasons for refusal were disinterest or the impracticality of undertaking the programme and for withdrawal, medical complication or deterioration. Conclusions The invitation to undertake a programme of therapeutic exercise is accepted by about two-thirds of patients. Rates of adherence and completion are relatively high, but overall, only about half of patients offered a programme complete one. There is a need to modify exercise programmes if they are to be acceptable for the majority of patients.

Patients with lung cancer experience muscle wasting and weakness. Therapeutic exercise may be beneficial but is not always practical. An alternative approach may be neuromuscular electrical stimulation (NMES) of the quadriceps muscles, but this has not been formally examined in patients with cancer. Thus, we have undertaken this pilot study to assess feasibility and inform the design of future studies. Sixteen patients were randomized to receive usual care (control group) or usual care plus NMES for four weeks. NMES consisted of daily stimulation to both thighs for up to 30minutes (frequency 50Hz, "on" cycle 11%-25%). Adherence was assessed by a self-report diary and a semistructured evaluation form. Quadriceps muscle strength, exercise endurance, and free-living physical activity were assessed using a Cybex NORM dynamometer, an endurance shuttle walk test, and an ActivPAL accelerometer (mean daily step count), respectively. Changes in outcome from baseline were compared between groups by mean differences and their 95% confidence intervals using independent t-test (P=0.05). Median (range) adherence to the program was 80% (69%-100%). All patients found the NMES device easy to use. Changes in outcome favored the NMES group, with mean differences of 9.4 Nm (21%) in quadriceps muscle strength, 768 steps (15%) in free-living activity, and 138 m (8%) in exercise endurance, but none of the differences were statistically significant. In conclusion, NMES warrants further study in patients with lung cancer.

Background: Breathlessness is a common and difficult symptom to treat in patients with cancer. Case reports suggest that nebulised furosemide can relieve breathlessness in such patients but few data are available. Method: Patients with primary or secondary lung cancer and a Dyspnoea Exertion Scale score of ⩾3 were recruited. Following familiarisation, patients received either nebulised furosemide 40 mg or nebulised 0.9% saline under double blind conditions or no treatment, in random order on 3 consecutive days. Patients undertook number reading and arm exercise tests to assess breathlessness and its impact, and were asked to report subjective benefit and any preference between nebulised treatments. Results: 15 patients took part. There were no differences between furosemide, saline and no treatment in the outcomes of the number reading test (eg, mean number read per breath was 6.7, 6.4 and 6.7, respectively) or arm exercise test (eg, mean Borg score at maximum equivalent workload was 2.3, 2.5 and 2.7, respectively). No adverse effects were reported, although there was a small fall in forced expiratory volume in 1 s and forced vital capacity following saline. Six patients considered that their breathlessness improved with nebulised treatment, three preferring saline, one furosemide and two reporting they were of equal benefit. Conclusions: Our findings do not support a beneficial effect from nebulised furosemide in patients with cancer related breathlessness. Listed on the National Research Register (N0170118249) and the UK Clinical Research Network Portfolio Database (1428).

Rehabilitation is an integral part of cancer care and aims to maximise the functional ability and independence of patients, whatever the stage of their disease.1 To help achieve this, there is a need to identify which (if any) symptoms limit the patient’s ability to undertake activities of daily living. Patients with cancer commonly report breathlessness on exertion, and practitioners may assume that the breathlessness is the limiting symptom and may not enquire about peripheral muscle fatigue, even though this is known to contribute to exercise limitation in patients with cardiopulmonary disease and …

Nocturnal hypoxemia is associated with excessive daytime sleepiness in patients with chronic respiratory disease. This relationship has not been explored in patients with cancer. This study examined the prevalence of nocturnal hypoxemia in patients admitted to a specialist palliative care unit, and explored relationships with demographic and physiological parameters, opioid or other sedative drug use, and daytime sleepiness, fatigue, and quality of life. Demographic details, diagnosis, performance status, body mass index, opioid or other sedative drug use, hemoglobin, spirometry, and sniff nasal inspiratory pressures were obtained, along with Epworth Sleepiness Scale, Multidimensional Fatigue Inventory, and Short Form-36 health questionnaire scores. An oximeter recorded resting daytime oxygen saturation (SaO2); overnight SaO2 was recorded for a minimum of five hours. Nocturnal hypoxemia was defined as SaO290% foror=2% of the monitored nighttime. Of 100 patients, 35 had nocturnal hypoxemia. These were more likely to have lung disease (P0.05), a lower forced expiratory volume in one second % predicted (P=0.01), lower daytime SaO2 (P=0.01) and higher levels of mental fatigue (difficulty concentrating) (P=0.02), compared to those without nocturnal hypoxemia. Both groups exhibited abnormal levels of daytime sleepiness. Nocturnal hypoxemia is common in this group of patients and may contribute to mental fatigue (difficulty concentrating).

We describe two terminally ill cancer patients severely distressed by intractable hiccup. Commonly recommended treatments were ineffective. Intravenous midazolam 5-10 mg rapidly relieved the hiccup. Maintenance treatment comprised midazolam 40-120 mg/24 hr by continuous subcutaneous infusion.

Breakthrough Pain In Patients with cancer is common, often unpredictable and can rapidly become severe. Its treatment with orally administered opioids may not be optimal due to the slow onset of pain relief. The parenteral route provides more rapid onset of pain relief but is not always an available, convenient or preferred option. Newer routes of analgesic administration have been or are being developed, such as transmucosal, nasal and inhaled, that aim to combine rapid onset of pain relief with convenience.1 Little is known regarding how acceptable patients view these different routes for the administration of analgesia for breakthrough pain. To begin to explore this we undertook this survey.

Breakthrough pain in patients with cancer is common, often unpredictable, and can rapidly become severe. Treatment using the oral administration of opioids is not optimal due to the slow onset of pain relief. Nasal administration of analgesics potentially offers more rapid pain relief. This study investigates the tolerability and efficacy of a novel morphine-chitosan formulation. Twenty episodes of breakthrough pain were observed in 14 patients with cancer who received 5–80 mg of nasal morphine-chitosan. Nasal symptoms, sedation, giddiness, nausea, and other volunteered symptoms, along with pain scores (pain intensity and pain relief), were recorded at baseline and at regular intervals up to 4 hours after administration, together with an overall satisfaction rating. The formulation was acceptable to patients, generally well tolerated, and had an onset of pain relief 5 minutes after dosing. This formulation warrants further study.

The objective of this study was to examine the relationship between descriptors of breathlessness and its underlying cause in patients with lung cancer and cardiopulmonary diseases to see whether descriptors might be used to help determine the cause of breathlessness, particularly in patients with lung cancer. We studied 131 patients with primary or secondary lung cancer, whose breathlessness was attributed to tumor mass, pleural effusion, lung collapse, metastases, pleural thickening or lymphangitis carcinomatosis, and 130 patients with breathlessness attributed to asthma, chronic obstructive pulmonary disease (COPD), interstitial lung disease or cardiac failure. Patients selected statements (descriptors) that described the quality of their breathlessness from a 15-item questionnaire and the relationship between the descriptors and the attributed cause of breathlessness was evaluated by cluster analysis. All patient groups were characterized by more than one cluster and several clusters were shared between groups. Specific sets of clusters were associated with breathlessness due to asthma, COPD and cardiac failure, and to cancer causing collapse, metastases or pleural thickening. The association of different sets of clusters with the different diagnostic groups suggests that patients are describing qualitatively different experiences of breathlessness, but the relationship does not appear to be sufficiently robust for the questionnaire to aid differential diagnosis.

This work was undertaken by the Science Committee of the Association for Palliative Medicine of Great Britain and Ireland (APM) as a demonstration project in developing clinical guidelines relevant to palliative care from a pragmatic approach to literature review and grading of clinical evidence. CANCERLIT and Embase were searched for relevant papers written in English, published since 1980. Each study identified was rated against agreed criteria for levels of evidence. Most studies were not specifically designed to define speed of response, and were not undertaken in palliative care patients. Thus, careful reading and grading of each study was necessary. Sufficient evidence was identified to make recommendations for clinical practice in a palliative care population of patients, and areas for future research have been identified. Bisphosphonates appear to have a role in managing pain from metastases which has been refractory to conventional analgesic management and where oncological or orthopaedic intervention is delayed or inappropriate.

National guidelines recommend that physical, psychological, social, spiritual and financial support needs are routinely assessed in people with lung cancer, as a minimum, around the time of diagnosis, on completion of primary treatment, when there is significant deterioration of symptoms and when dying is diagnosed.1 2 Self-assessment is considered a useful part of the process and several tools have been highlighted.3 One of these, the Sheffield Profile for Assessment and Referral to Care (SPARC), contains 45 questions with 56 possible responses covering seven areas of potential need.4 For most questions, patients rate the degree to which they have been distressed or bothered by a symptom …

Background A reduced exercise capacity is associated with increased morbidity and mortality in patients with advanced non-small cell lung cancer (NSCLC). Therapeutic exercise can be beneficial and neuromuscular electrical stimulation (NMES) of the quadriceps muscles may represent a practical approach. The primary aim of this study was to determine the acceptability of NMES of the quadriceps to patients with NSCLC used alongside palliative chemotherapy. Secondary aims explored aspects of safety and efficacy of NMES in this setting. Methods Patients with advanced NSCLC due to receive first-line palliative chemotherapy were randomized to usual care with or without NMES. They were asked to undertake 30 minute sessions of NMES, ideally daily, but as a minimum, three times weekly. For NMES to be considered acceptable, it was predetermined that ≥80% of patients should achieve this minimum level of adherence. Qualitative interviews were held with a subset of patients to explore factors influencing adherence. Safety was assessed according to the Common Terminology Criteria for Adverse Events. Quadriceps muscle strength, thigh lean mass, and physical activity level were assessed at baseline and after three cycles of chemotherapy. Results 49 patients (28 male, median (IQR) age 69 (64−75) years) participated. Of 30 randomized to NMES, 18 were eligible for the primary endpoint, of whom 9 (50% [90% CI, 29 to 71]) met the minimum level of adherence. Adherence was enhanced by incorporating sessions into a daily routine and hindered by undesirable effects of chemotherapy. There were no serious adverse events related to NMES, nor significant differences in quadriceps muscle strength, thigh lean mass or physical activity level between groups. Conclusions NMES is not acceptable in this setting, nor was there a suggestion of benefit. The need remains to explore NMES in patients with cancer in other settings. Trial Registration Current Controlled Trials ISRCTN 42944026 www.controlled-trials.com/ISRCTN42944026

We studied the effects of transcutaneous electrical nerve stimulation (TENS) over the chest wall on breathlessness in normal subjects during exercise. Eleven male subjects performed a progressive incremental exercise test to break point on four consecutive days. TENS (continuous form, frequency 100 Hz, pulse width 200 microseconds) was applied during three of these tests-over the second intercostal spaces during inspiration ('in phase' with the underlying inspiratory muscle contraction) or expiration ('out of phase' with contraction) or over the deltoid muscles during inspiration (control), and not on the fourth occasion in random order. Breathlessness (Borg scale), heart rate, respiratory frequency, tidal volume, minute ventilation and minute oxygen uptake were measured. No significant differences were found for any of the measured variables between the four study days. We conclude that TENS under these circumstances has no effect on the sensation of breathlessness or on the measured physiological variables in normal subjects during exercise.